Autism took their speech, but technology is helping these kids express themselves
Even parents have been astonished to learn how much their children were processing, once they could type out their thoughts and feelings on tablets, phones and other devices.
Diagnosed with autism at age 2½, twins Eddie and Mike Tuckerman, now 21, speak only rarely. Starting in their tween years, sometimes the boys — mostly Eddie — would connect with their mother by writing in a notebook, but communication was always a struggle.
The Tuckermans gave the boys iPads, showing them how to text, navigate YouTube, and search the web, but they didn't use the tablets often.
Then early one morning, their father, Mike, plugged in his cell phone, which had died overnight. Up popped text after text. He was shocked to discover that the texts had come in the middle of the night from Eddie, then 14, who was by then sleeping in the next room.
Mike hadn't even known Eddie could text. But what surprised him even more was the clarity of his texts.
"What he was texting was way more language than he had ever said," recalled his mother, Sue.
"He started with 'Dad' and, of course, my husband didn't respond because he was sleeping. Then it was, 'Dad, where are you?' The more my husband didn't respond, the more Eddie would add."
Eddie wrote about the mall outing they had planned for the next day, down to which stores they would visit and what they would have for lunch.
"It was eye-opening because, although we'd tell them we were doing this stuff, we were never quite sure how it was registering," said Sue.
She was also stunned to discover what her son, Mike, could navigate on his iPad. "You can see that he's understanding things because he gets on the Jeopardy website, in the archives, and goes through every question and then Googles the answer," she said.
"We know that there's so much in his head. He doesn't tell us any of it but we see what he's doing. It's opened up a whole new world."
Processing beneath the surface
People with autism process spoken language differently, relying more on sight for speech recognition and production, said Eric Mitchell, director of the Ruttenberg Autism Center in Blue Bell.
"They are actually outsourcing some of their language processing to their visual cortex," he said. "There is a lot of processing happening underneath the surface that isn't conscious or communicated. Because tablets and augmentative communication devices are visual, they are often successful learning tools for people with autism."
Handwriting can be challenging due to motor difficulties that often are a part of autism, and it is more time consuming. Assistive communication devices used to supplement or replace speech range from simple communication books or boards, to computer and phone apps, and devices that can generate speech and produce written output. The challenge is discovering which of the many options works best for the individual.
"Once we give folks the tools to express themselves and give them a context in which to do that, you see that communication coming through," Mitchell said. "Your iPad or phone is portable and viable for everyday, in-the-moment communication. The device is a bridge to getting their voice heard."
Before kids can learn to text or type, they need foundational skills, often introduced to non-verbal kids as young as 2 through a Picture Exchange Communication System (PECS). Working closely with a therapist, the child learns to use pictures to express wants and needs.
"Pictures are enticing and easy to understand and will sometimes lead to other augmentative communication devices or possibly verbalization," said Erin Oakes, clinical director of the Center for Autism in West Philadelphia and the Northeast.
Finding the best system for an individual often requires trial and error, with support from a therapist, the child's family and teachers.
"If you provide a system that is too simple for their capability, they're not going to be able to express themselves fully," said Jennifer Burstein, manager of the department of speech language pathology at Children's Hospital of Philadelphia. "The critical part of assessment is to determine what are this child's skills and how do we develop a system for them that will be effective and they can use independently."
No longer to be pitied
Sue Rubin, who wrote and was the subject of the 2004 Academy Award-nominated documentary, Autism Is a World, says facilitated communication rescued her from the silence of autism.
At 13, a school speech therapist and educational psychologist introduced the concept to Rubin and her mother.
"My mom immediately learned how to be a facilitator and spent many hours working with me," recalled Rubin, 39, by email. "I was seen as a low-functioning, retarded person before I was able to communicate. As soon as I began to type, my parents knew I could go to college. We killed the old idea of who I was and laid out new plans. I now have friends who enjoy my company as equals instead of as a person to be pitied."
Rubin, who lives in Whittier, Calif., urges others with autism to discover the means of communication that work best for them.
For Stefan Velocci, 21, that's a combination of many systems, mostly apps on his iPad. As a toddler, Stefan was diagnosed with autism, apraxia leading to motor planning challenges, and oral motor apraxia, meaning he can't coordinate oral movements needed for speech.
"My husband and I have both been in the technology field, so Stefan always had opportunities to use electronics," said his mother, Karen, director of technology for the Autism Cares Foundation in Southampton. "When we got the iPod touch and iPad, he saw he could navigate around and that was his main interest. Since he can't communicate through speech, it gives him another way to express himself."
The program they've found most effective, Proloquo2Go, is portable, and at around $400 for the iPad and about $249 for the app, is more cost effective and less bulky than previous systems.
"As these kids get older, they want to fit in, they don't want to stand out," said Karen. "They're using a device that everyone is using. Stefan's going to be aging out of school and since technology is his interest and talent, I hope that he can get some kind of meaningful work in technology, because that is what he loves."
While at school during the day, Stefan emails his mother. "The grammar is not always 100 percent and things might not be capitalized, but I want to see what he's capable of on his own," she said.
While Stefan and the Tuckerman twins can type on their own with little assistance, others need a facilitator to help them type, by guiding an arm or hand. That prompts debate about whether the ideas expressed are those of the writer or the facilitator.
Stefan's typing has offered his parents a window into his world.
"Through the iPad, Stefan can tell me what he prefers to eat and he has surprised me with some of the choices for foods I did not know he knew, let alone liked," said Karen.
"He loves chicken fingers, like all kids, but one time he wanted the spicy ones and tried to type 'buffalo.' He is also a pasta man but didn't want the penne one day and we discovered he wanted 'white.' We thought that meant no sauce but he wanted the oil and garlic like his dad!"